Archive for June, 2007

Doctors Waiting Rooms Make Me Sick

Dear Doctors Surgery Staff,

Your waiting rooms make me feel really unwell.

You have put posters all over every wall – informative and something to look at while we wait?   More like overwhelming, hyper stimulation, confusion inducing overload.  Oh and you expect me to be able to pick out the important notices (report to receptionist, you cannot ring for repeat prescriptions, we are closed on such and such day) from all the other colourful, bold, eye catching twaddle.

You have a television on in the corner of the waiting room.  Something to occupy my mind, keep me calm, break the silence?  Something to distract and further pinball my brain.  More stimulation – usually from rubbish pap day time programmes that I avoid because they make my brains leak from my ears (well that’s how it feels anyway).

Your receptionists have loud conversations.  Right next to us.  About other patients.

Your lighting is dim.  It makes my head spin.

Your chairs are very close together.  So I’m uncomfortable and very close to potentially infectious people.  Thanks because what I need is an infection.  That’s a big help.

Your touch screen check in system is great – but it gets really sticky and god knows how germy it gets.  I tried checking in with my elbow but it’s not sensitive enough.  Can someone give it an anti-bacterial wipe every couple of hours? 

Please – your reception makes me feel so ill.  Can’t you improve the lighting and make it more restful?  When we have to wait and wait for late running doctors soaking up posters and telly and cave like lighting and conversations … it’s no wonder everyone’s blood pressure is up.  I know you’re on a budget and everything but please?

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Grumpy Fuel

1. My entitlement to half pay ends in 2 weeks time when I will become income-less. 

The shift in role and feelings of dependency are more critical in my mind than loss of income.  I appreciate I am in a fortunate position that my husband is able to support us both for the time being – I have been poor most of my life, been in quite a bit of debt as an adult which I scrimped and saved my way out of, I know what it’s like.  So that just shovels a bit of guilt on top as I think i should be grateful all I’m struggling with is my pride. 

Still this is my grumpy fuel list and it’s on there rightly or wrongly.

2. Doctors Surgeries

I have a really good GP who understands CFS.  Not something to be grumpy about. 

Here’s the grump – she works part time (good for her) and the NHS appointments system sucks.  So, as I need a new sick note in 2 weeks time and I need to chat about a zillion things like medication and pain control, DLA, blue badges and what not – the only safe way is to ring 2 weeks ahead and make an advance appointment.

Except no-one is answering the phone at my doctors.  

I cannot begin to tell healthy people how difficult it is to direct my focus, concentration and energy on making a call like this – and how frustrating and weeepy not getting through after 3 attempts makes me.  I can’t just do something else and then dial again – I need a stack of focus to make this stupid call.  Suddenly half my day becomes about speaking to the receptionist at the doctors – who will probably tell me there’s none left and I’ll need to ring in 3 days for the next round.  Argh!

UPDATE: Finally get through at 3pm and guess what.  There’s no advance appointments left.  So I either have to go a week later (and wait a week to ring again and try my chances at an advance), or ring ring ring 2 days before the day and hope I get one.  Or see another doctor who doesn’t know me and probably doesn’t know M.E. or like either us.  Tears of frustration.

3. My phone is broken.  No, my phoneline is broken.

I reported the fault on Thursday night and felt waves of relief and happiness that BT have an online system for these things.  Speaking to people in call centres is one of my deadliest tasks – it’s so totally exhausting.  I am considering taping a cue sheet to the phone that says “I am disabled.  Please speak more slowly and have a little more patience. (insert swear word insult here)”.

Anyway – all was set to fix the problem on Saturday morning.  Saturday evening – still broken … except now the online fault system is broken too.  So I have no way to track what’s going on – oh, except ring the call centre.

Today we can make outgoing calls but there’s still a divert on the phone and incoming calls still get the fault message.  I bite the bullet and ring BT’s special number.

Don’t you hate it when recorded phone messages tell you can save time by logging on to their web site – when the reason you are calling is because their web site is broken or the web site told you to ring the number?  Meanwhile they are in fact wastng my time by telling me this.

I digress.  Through a series of automated button presses I discover their system says there’s still a fault on our line.  OK then.  So I opt to speak to an advisor to see when it might get fixed.  Once I had been on hold for 18 minutes (I wanted to get to 10 mins but I couldn’t cope) my brain shut down and I couldn’t remember any of the words to kick start the call or even my own phone number.

Online tracking still broken.  Sigh. 

4. I ache. 

5. Simple things are foxing me.  I am so tired and exhausted that simple tasks are not only tiring but I get all in a twist.  My brain doesn’t know the logic way to do things simply, so I do them in a complex or muddled way which is physically more demanding and harder to understand my own actions and I get more muddled and so on and so on.

Confused.

6. (Apart from my husband) I am not getting any help.  All those people who said they would help are not around, or are not helping me how we agreed.  And all those people who said “if I can help in any way just say” haven’t figured out that I don’t know how to ask or what to ask for, or I can’t repectfully guess what they might be willing to give.  Or they are using that as an excuse not to help.  Or they have forgotten about me because I am this strange sometimes-sharp-sometimes-brain-dead creature who moves between bed and sofa hidden from the real world.

This is a largely irrational and child-foot-stomping grump.  I understand people are busy and people aren’t mind readers, etc etc.  I just want someone to make a fuss and spend a minute thinking about what life must be like for me and using their healthy brain to figure out a way to offer to help. Grump.

7. I have a long list of doing things I cannot do and no-one to help (I exclude hubbie again as he already has a big section off this doing list).  So frustrating and grump making is it all that my only option is to Not Think About It and loet the doing things fester and rot and cost me money.

(Here is something for number 6 – either ask for something off the list or at the very  least offer to help me figure out the true hard copy List Of Doing Things and ways or people to get them done).

8. I finally get the blogging vibe back and now all the thinking is making my head go all migrainey.  Which also means my new medication is not working today.  Double grump fuel injection.

Big Grin Gloss

I so want to show you that a positive attitude can prosper even with CFS – I believe the experts who say it’s important for recovery and coping.

BUT I also experience frustration, anger, sadness, loss, grief, upset, moodiness, confusion, bewilderment.  It’s just as important to accept these feelings as legitimate in order to move on and cope and feel genuinely positive.

It’s a tough balancing act – to allow yourself to feel, to express, to release but not to wallow to an extent that may be unhealthy, triggering depression and/or relapse.

But CFS is an all round balancing act!

There’s no point glossing over the nasty stuff – certainly not with those closest to me. 

Sometimes it’s needed, necessary – but it’s not good for me in the long run.  I am the kind of person that needs to get stuff out to purge it, to turn it around, to let it go.  I consider myself very fortunate to have people who will let me do that.

Sometimes friends, my blogging will show up the nasties as well as the good stuff. 

Late Addition:

A timely and appropriate article from butyoudon’tlooksick.com entitled It’s okay not to smile

Swelling Explosion of Irritability

I used to get quite irritable when I was tired.  Now I am tired almost all of the time.

But I find the swelling and explosion of irritability is not 24/7.  In fact when it rises from my guts and crashes through my body I takes me by surprise.  I’m clench fisted, tight mouthed, spluttering, holding my breath and wondering what on earth is going on.  It doesn’t seem to have a reason – or does it?

I awoke today feeling cruddy after 4 or 5 days of feeling quite reasonable (relatively speaking).  A disturbed nights sleep, pain and discomfort with a brain muddling grogginess from my new medication (that’s for another blog when I know more from within this skin) left me waking with all of those feelings, unrefreshed and with great sadness that improvement was interupted or just transient (yet again).

Even so, I rallied myself as I had tickets for an outdoor matinee Shakespeare perfromance this afternoon (starring my brother) accompanied by my husband and mom.  And I enjoyed the show – yes I did!  Beautiful setting, great production, laughs a plenty, family pride.  Yet a background hum of exhaustion, tiredness, weariness, pain and woolly head.

Home for tea and biscuits and nattering mother.  Lovely to see her.  But I reaches a point when all I could hear in my head was “please take her home, please take her home”.  I am not mean spirited believe me, I am just exhausted.  Not so exhausted that I can’t blog though you might rightly say?  Well no – but the ever present physical apsects of this illness, of a long day, of a bad day, is so distracting, so loud, so nagging.  And an extra voice, a wanting of attention – I can’t handle it and I feel so sad at not being able to give.  And I feel so terribly guilty and ashamed that I am not able to say to people “I need you to go now / shush now / leave now” in a way that doesn’t make them feel snubbed.

So I am left alone, quiet house, only the thump of CFS in my mind and I swell with frustration and irritability and explode in tears and self pity.  Why?

I wonder now if it is over stimulation.  Stimulating things from one minute of this afternoon:

sunlight, breeze, warmth, flies, smell of straw, seeing person/person/person/person/child/person, sound of chatter (many conversations at the same time – many too close and too loud), sloping forward of my wheelchair, lights in trees, mud, pain in glands, fuzzy head, pain in arms, pain in neck, music, people moving behind me

All in the space of one minute.  It’s a lot for a person who sits at home alone a lot and doesn’t even play music because it’s a capture of all attention.

I know I am going on and not making alot of sense and usually I would do this in private, in my journal.  And be assured this will pass (probably and hopefully quickly) but it’s the explosion of frsutration from nowhere – that must have a grounding in many obvious things that I need to pour out to make sense of.  To have a hope of tackling it.  Because when my husband gets home he won’t understand tears and banging fists and clenched teeth and nasty words and lashing out when we’ve had such a lovely sunny outing with smiles.  I feeling like a toddler with a tantrum unable to articulate the why and the seed.  He wanting to help but feeling lost – as lost as I am.  Both waiting for it to pass and putting it down to being tired.  Tired.

Some of it is me – has always been me.  But CFS fuels the fire and it’s unpredictable nowdays (but to be fair not frequent either).  I’m wanting to be intellectual about it – but stuck in the fist clenching phase is perhaps not the right time to unpick it. 

Off to stomp about (mentally though as I don;t have the energy to stomp or thump).

CFS Equation

We lost a friend of the family yesterday to a long battle with cancer.  This loss is making me think all the more about life, death, purpose.  Life is precious and we should all make the most of it.

But.  There are so many things in life and I have so much time, yet so little energy or concentration.  There are all the things I want to do and then all the things that need to be done.  So many things, so much stuff and it mounts up when you struggle to even do the small things.  My achievements today are having a bath and balancing my monthly budget.  These are big things for me!

Energy seems in an ever less supply.  Things/stuff to increase every day.  I’m caught in the middle with frustration piling up and eating away at that energy.

It minded me of equations at school.  They said everthing on the right side needs to balance everything on the left side and that’s what’s at work here.  My expectations and desires far exceed my ability. 

I need a major adjustment.  Which scares me as I do so little already – to let go of more, to ask for more help, to learn not to care about huge sections of life – it’s frightening.  But seemingly necessary?

It’s something like:

stuff done = energy / time

But what I can’t work out is how to show potential stuff and where stuff not done goes .  That’s what happens when a woman not strong at maths gets CFS and tries to make an equation I guess.  Erm …

potential stuff – (energy / time) = stuff not done

Any ideas how to get my life to add up?

My Disability Is …?

I’ve finally realised what my disability is.  Some people have disabilities that are easy to spot, name, describe.  CFS is one of those disabling conditions that is more difficult to pin down.  I have a host of symptoms, my condition is variable over time and my need for assistance is sometimes preventative (using a wheelchair to avoid triggering symptoms and worsening of general condition).

It makes getting assistance, claiming benefits and getting a blue badge for parking very difficult for many sufferers.

Today, after months of not knowing quite how I was disabled it came to me.  My disability is my lack of energy.  Some people have a lack of walking, lack of sight, lack of mental capacity.  I have a lack of energy.  Even on a day when I am seemingly “normal” and able that lack of energy is still there.  I do not have the reserves of other people.

Energy, or lack of it, or being without reserves of it – that is my disability.

It sounds kind of obvious now!


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Push It 11 Sep 2011

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CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.